If We Knew Then - Down Syndrome Podcast

We are Stephen and Lori Saux, the hosts of the If We Knew Then podcast and parents of two children. Our youngest, Liam, just happens to have Down syndrome. When Liam was born, we didn’t know very much about Down syndrome, and most of the information we did have wasn’t very hopeful, positive, or truthful. Well, this podcast was created to change that. Through honest conversations with parents, self-advocates, educators, medical professionals, and community leaders, If We Knew Then aims to share stories that break down stereotypes to help redefine what it means to live a life that includes Down syndrome.

Each episode is an invitation to see beyond archaic assumptions and into the truth that our children’s lives are full of potential, love and value. This podcast is more than just a podcast; it’s a community where caregivers can find support and encouragement. Where the fears we carry can be met with understanding and where victories, big and small, are celebrated together. Our mission is to empower families to create change through advocacy and to remind the world that inclusion is not only possible but essential... for all of us.

We believe in sharing the true experiences that often go unheard and in building a future where every person with Down syndrome writes their own story. Whether you’re a parent just starting this journey, an educator seeking insight or an ally who wants to stand with the Down syndrome community, you belong here. This is where caregivers find connection, love fuels advocacy and the true narrative of Down syndrome is written.

Why we started recording:

When we began, we did not plan to start a movement. We wanted to make sense of what we were learning as parents. Early on, every appointment focused on what Liam might not do, rather than what he could do with support. We looked for voices that offered perspective and encouragement. Finding few, we decided to record our own.

Each episode is structured around a single topic. We have covered medical updates, inclusive education, communication, advocacy in schools, and the transition to adulthood. We approach every conversation as parents asking questions, not experts delivering answers. Over time, the audience has grown into a community that includes families, teachers and professionals who use the podcast to learn from one another.

Listeners often contact us to say that the podcast helped them during the first days after receiving a diagnosis. Some teachers have written that the interviews helped them adjust classroom practices to better include students with intellectual disabilities. These specific outcomes show the impact that open and factual discussion can have.

What we know now:

The name If We Knew Then came from a conversation about hindsight. We often thought about what we would have done differently if we had known more in the beginning. We would have pushed sooner for inclusion and worried less about milestones set by comparison rather than need.

Through the podcast, we continue to learn from others who share that same reflection. Parents speak honestly about uncertainty after diagnosis. Educators explain methods that lead to student progress. Doctors describe how life expectancy and quality of care have improved over the past few decades and people with Down syndrome share their true experiences.

Concrete facts that replace old fears with knowledge.

We know now that advocacy is most effective when it starts with accurate information and cooperation among families, professionals and self-advocates. That belief shapes every episode we record.

What advocacy means in practice:

Advocacy on our podcast focuses on practical changes. We address how to prepare for Individualized Education Program (IEP) meetings, how to communicate with healthcare providers, how to navigate social situations that can exclude people with disabilities and our realization that living a life with Down syndrome in it, may quite possibly be the best thing to happen to our entire family.

The goal is to replace assumptions with information. For example, speech and occupational therapists have described the importance of early intervention programs backed by research. Self-advocates have discussed how workplace inclusion improves both independence and confidence. Parents have shared how support networks reduce isolation and increase access to accurate resources.

The stories collected through If We Knew Then form a record of how Down syndrome advocacy continues to change. Decades ago, most children with Down syndrome were not included in general education classrooms. Now, federal law and better understanding of differentiated instruction have made inclusion more common. Hearing firsthand accounts of this progress helps new families understand what is possible.

An ongoing conversation:

If We Knew Then is available on all major podcast platforms. Each episode is ad-free and open to anyone interested in Down syndrome, inclusive education or family advocacy. We continue to record from our home in California and produce new episodes several times each month.

Our purpose remains clear: to provide accurate information, document lived experiences and encourage inclusion in schools and communities. By sharing practical advice and real examples, we hope to motivate our community to be the authors of their own stories and let the past misperceptions and stereotypes fade away.

Why we started recording:

What we know now:

Concrete facts that replace old fears with knowledge.

We know now that advocacy is most effective when it starts with accurate information and cooperation among families, professionals and self-advocates. That belief shapes every episode we record.

What advocacy means in practice:

An ongoing conversation:

Listen on:

Video Version of

IF WE KNEW THEN

CLICK HERE to watch the podcast.

Episodes

Sunday Feb 02, 2025

178. The 2025 DSDN Rockin' Dad Retreat with Ben Hughes

Sunday Feb 02, 2025

In July 2025, DSDN will host their annual Rockin' Dad Retreat for fathers of children with Down Syndrome to gather from across the country. We are joined again by Ben Hughes to give us all the details of this year’s event and also an update on his own journey.
Retreat Details - WHEN: July 11-12, 2025, WHERE: Hilton San Diego Gaslamp Quarter, San Diego, CA
Registration info: https://www.dsdiagnosisnetwork.org/dad-retreat-registration
Ben’s email: ben@dsdiagnosisnetwork.org
Ben’s Personal Fundraising Page: https://dsdn.networkforgood.com/projects/237847-ben-hughes-s-fundraiser
Get the DSDN App today! https://www.dsdiagnosisnetwork.org/dsdn-app
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/02/178-the-2025-dsdn-rockin-dad-retreat-ben-hughes/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Jan 26, 2025

177. Showing Up For The Challenges - Karen Maezen Miller

Sunday Jan 26, 2025

Lori recorded this episode in October but what is very apparent is how challenges and the unknown are an everyday thing that helps tell our stories, In this episode Maezen talks about finding our space and our 'me' time.
Karen Maezen Miller’s Website: https://karenmaezenmiller.com
Maezen’s books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/01/27/177-showing-up-for-the-challenges-karen-maezen-miller/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Saturday Jul 20, 2024

176. Revisiting 10,000 Maniacs Founding Member Steven Gustafson

Saturday Jul 20, 2024

Steven Gustafson is a founding member and bassist of the band 10,000 Maniacs. His sister, Cathy, had Down syndrome and we got a chance to discuss with him the impact she had on his life and the lives around her. Today we revisit that interview to share this sibling love story.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/01/27/176-revisiting-10000-maniacs-founding-member-steven-gustafson/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Jun 16, 2024

175. Communicating Our Stories with Sid and Vaish Sarathy

Sunday Jun 16, 2024

This week we revisit our conversation with Sid and Vaish Sarathy. Sid, who has the duel diagnoses of autism and Down syndrome. Although he is non-Speaking, Sid is a poet with two published books. Dr. Vaish Sarathy is a functional nutrition practitioner and science educator. She is the founder of Functional Nutrition for Kids and Plum Pudding Chemistry, both practices designed to optimize the learning potential of kids with Down syndrome and/or autism using both functional medicine and non-linear education principles. In this episode, we discuss their journey with communication, breaking down barriers of misperception and limiting thoughts to support Sid in freeing his voice and the responsibility that freedom brings with it.
Sid’s Poetry Books: https://push-press.blogspot.com
Sid’s Instagram: https://www.instagram.com/downlikesid/
Vaish’s Website: https://functionalnutritionforkids.com
Vaish’s Podcast Funtional Nutrition & Learning For Kids: https://podcasts.apple.com/us/podcast/functional-nutrition-and-learning-for-kids/id1478145610
Rapid Prompting Method (RPM): https://www.halo-soma.org
Chris Martin’s Website: www.UnrestrictedInterest.com
Connections Academy: https://www.connectionsacademy.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/06/15/175-communicating-our-stories-with-sid-and-vaish-sarathy/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Jun 09, 2024

174. Advocating For Speech Therapy - Julie Picot

Sunday Jun 09, 2024

This week we once again sit down with Julie Picot but this time we are briefly joined by her daughter Elyse. We take a deep dive on the speech and reading journey in our community and discuss different ways to advocate for our children.
Teach Your Child To Read in 100 Easy Lessons: https://a.co/d/3CEtpLY
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/06/09/174-advocating-for-speech-therapy-julie-picot/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Monday May 27, 2024

173. The Endless Possibilities of People with Down Syndrome: Revisiting Jake Pratt

Monday May 27, 2024

This week we revisit our interview with Jake Pratt, an inspiring young man from Vestavia Hills, Alabama who has never let expectations define him.
From scoring a touchdown on his high school football team, to graduating from the Clemson LIFE program, to working two jobs (including his dream role at UPS), Jake continues to show the world what true inclusion and opportunity look like.
Alongside his mom Kathy and his sister Amy, Jake shares his story of perseverance, possibility and the endless value of believing in our children. His journey reminds us all that people with Down syndrome deserve not just a seat at the table, but the chance to thrive.
Jake’s UPS Commercial: https://youtu.be/fw97dqK6uiM
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/05/27/173-the-endless-possibilities-of-people-with-down-syndrome/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Saturday May 11, 2024

172. Happy Mothers Day: We Celebrate You

Saturday May 11, 2024

Today we celebrate all the powerful mothers who give so much to their children day in and day out. Remember how strong you are. The world runs on that power and we thank you.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/05/11/172-happy-mothers-day-we-celebrate-you/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Apr 28, 2024

171. Alzheimer’s Disease In People with Down Syndrome - Dr. Elizabeth Head

Sunday Apr 28, 2024

This week we had the privilege to talk to Dr. Elizabeth Head, Professor and Vice Chair for research at the University of California, Irvine in the department of Pathology. Dr. Head has published more than 150 peer reviewed papers and has dedicated over 20 years to the study of aging and Alzheimer’s disease with a focus on people with Down syndrome.
Head Lab: https://sites.mind.uci.edu/headlab/
ABC-DS study - https://www.nia.nih.gov/research/abc-ds
DSConnect - https://dsconnect.nih.gov/
Center for Aging Research – Down syndrome - https://sites.mind.uci.edu/cfar-ds/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/04/27/171-alzheimers-disease-in-people-with-down-syndrome-dr-elizabeth-head/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Apr 21, 2024

170. Celebrating The Life of Carl Erskine with Ted Green

Sunday Apr 21, 2024

The world lost pioneering Down syndrome advocate Carl Erskine on April 16, 2024, at the age of 97. Carl and his wife Betty, were involved deeply with the Special Olympics and charities which aimed at helping people with developmental disabilities such as his son Jimmy. Carl Erskine was a MLB All-Star, World Series Champion, ally of Jackie Robinson and the last surviving member of the “Boys of Summer” Brooklyn teams of the 1950’s. To honor Carl’s life, we revisit our episode with documentarian Ted Green discussing his film ’The Best We’ve Got: The Carl Erskine Story’. As Ted says in this conversation, Carl and Betty are the perfect embodiment of what is on Jackie Robinson’s tombstone.
“A life is not important except for the impact it has on other lives“.
Godspeed Carl.
Website: https://www.carlerskinefilm.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/04/21/170-celebrating-the-life-of-carl-erskine-with-ted-green/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Apr 14, 2024

169. The Annual DSDN Retreats with Ben Hughes

Sunday Apr 14, 2024

This week we are fortunate to have Ben Hughes back on the podcast to discuss the Down Syndrome Diagnosis Network’s (DSDN) annual “Rockin’ Retreats” that offer our community the connection and respite caregivers truly need.
Retreat information page: https://www.dsdiagnosisnetwork.org/dsdn-retreats
Dad's retreat registration page: https://form.jotform.com/DSDN/2024-rockin-dad-retreat
Mom's retreat registration page: https://form.jotform.com/DSDN/2024-rockin-mom-retreat
DSDN website: https://www.dsdiagnosisnetwork.org/
DSDN Facebook Page: https://www.facebook.com/DownSyndromeDiagnosisNetwork
DSDN main fundraising page: https://dsdn.networkforgood.com/projects/201851-2024-dsdn-rockin-fundraising
A link to Ben’s personal DSDN fundraising page: https://dsdn.networkforgood.com/projects/207713-ben-hughes-s-fundraiser
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/04/14/169-the-annual-dsdn-retreats-with-ben-hughes/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Thursday Mar 07, 2024

168. Liam's 14th Birthday: Sharing Some Insight

Thursday Mar 07, 2024

Our son turned 14 last weekend and in this episode we reflect on the joys, challenges and growth we've experienced together on this journey with Liam.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/03/09/168-liams-14th-birthday-sharing-some-insight/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Feb 25, 2024

167. A Discussion About Using The R-Word with Lynette Louise

Sunday Feb 25, 2024

This week we revisit our interview with Lynette Louise who is board certified in Neurofeedback. We were very interested in the science of Neurofeedback but early on in the conversation we moved to a serious discussion about the use of the r-word and the reasons why Lynette uses it. This episode may feel a bit intense for many of you and we understand why, but we highly recommend listening all the way through to the end.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/02/25/167-a-discussion-about-using-the-r-word-with-lynette-louise/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Thank you for listening!

We are so happy that we can connect with people from all over the world and we appreciate you. If you would be so kind to rate, subscribe and comment where ever you listen to podcasts, it would help us reach an even larger audience.

All the best to you and please stay in touch. Stephen and Lori Saux